One of the issues I find most frustrating is the public perception of what disability is, or should look like. I am one of those people who doesn't look like I'm 'disabled' in the traditional sense. Sure I walk with a cane these days. But nine times out of ten people attribute its use to an acute injury. And most, when told that it is due to a neurological condition, look shocked, embarrassed, and/or horrified.
Most who have read my blog for any time know I have beaten the old "but you don't look sick" line to death. My trusty soap box is only still standing thanks to my clever use of chewing gum, broken paper clips, the insert from an old Wonderbra, and a misspent youth watching MacGyver (I pretty much deserve an honorary mullet at this point). But the truth is I generally don't look sick, well at least not in public. Out in public I am all Heidi Klum's doppleganger. Whilst, I tend to reserve my Linda Blair/Exorcist looks for the comfort of my own home, and my long suffering family.
I do look pasty and tired, but I'm pretty sure most people attribute that to my exciting nocturnal rock star lifestyle. An underlying, progressive neurocardiogenic disorder that is slowly destroying my body, is not usually the first thing that comes to peoples' minds.
This creates problems, and apparently annoys the crap out of some people.
If you saw me on the street, you'd see a hot 38-year-old woman with kickarse thighs. You may even think, what the hell is Supermodel Heidi Klum doing browsing through the Target bargain rack at this time of day? Surely she should be off preparing for the next Victoria's Secret parade? Those angel wings wont work themselves, lady! Don't Supermodel's have a work ethic? (Or maybe not. But it's my blog and really I can be as delusional as I like).
(The resemblance is striking, no?)
Leaving the house requires a Masters in logistics and planning. I begin my preparation the day before. I shower and sometimes, even get a bit crazy and go all out, and wash my hair the day before. Energy constraints do not often allow for both an outing and personal hygiene on the same day. On the day itself, I rest. Mornings are out as this really is my Linda Blair phase, pasty, no blood pressure, legs that don't want to coordinate, peasoup expulsion. I'm pretty sure my head may do a complete 360, but the hypoperfusion makes recollections a tad sketchy. I chug extra water and salt, pop more meds than my husbands grandmother, and go to the loo about a dozen time. All going well, I make my way to the car. Alas, a last minute call to "Abort the Mission" is not that unusual.
Here is the fun part. Being upright brings on my symptoms. My body loves the horizontal like Tony Abbott loves his Speedos. But is as adverse to the vertical, as old Tony is to, well everything. So I spend my trip, feet on the dash (to prevent blood pooling), head between my knees, clutching a puke bag 'just in case'. The AC gets turned up on full even in Winter (it's fun having a body thermostat set on 'Sahara') and we drive to the shopping centre trying to ignore the ever increasing hole in the ozone layer that we trialling behind us.
Once there we sit for a while whist my body recovers. Then through the prodigious use of swearing, grunting and helpful husband, or child, I can make my way into the shopping centre. Supermodel looks firmly in place.
When I'm standing looking at the rack of bargain dresses the real work begins. You see I may look all Ms Klum to you, but the reality is that I am working like there is no tomorrow, to maintain my upright posture. There are prayers to every deity known to man, offers of virgin and kitten sacrifices, and promises of left kidneys and first born sons, if only your legs will hold you up for a few more minutes. That the puke will stay in and your blood pressure will stay stable. That you can manage your slurring words enough that the sale assistant will think you have an exotic accent, and not that you are not a frequenter of crack dens.
And after that hour of fun you stumble your way back to your car looking like the intoxicated celebrity 'It Girl' you wish you were (though I'm not up there with the whole going commando business, I prefer my lady parts fully enclosed in granny undies). If you're lucky you'll make it, or at least have a husband who has perfected the 'I'm holding my wife up so she doesn't face plant, but it really looks like we are just a loving, snuggling couple'. If you're not lucky you get to face plant, inch your way out seat by public seat, or get carried.
Then there is the post party fun to deal with. When your body punishes you for your little outing. The overwhelming exhaustion, the nausea, the shaking, the migraine, the complete body tanty. The resignation that the next day, or sometimes week, is written off for coma sleep as your body tries to repair the damage. Because my outwardly hot supermodel body, is broken, and continues to break.
But all you've seen is that one moment of Supermodel glory. Of course I can't be disabled.
Disability doesn't have a look. You can't necessarily spot it at one hundred paces. The reality is that it has an infinite number of faces. Far more than any of us can imagine. And visible or not, you can cannot judge the cost for one moment of what others take for granted.
In that moment, I may not look sick or disabled in the eyes of others.
But it doesn't change the fact that I am.
“Be kind, for everyone you meet is fighting a harder battle.”
I so feel for the suffering and pain you've endured. I pray that you will find solace in the knowledge that its only a temporary thing and that relief is on the way. In the mean time know that my prayers are with you. A friend which has the same affliction as you forwarded this to me. I had suggested to her an alternative to the traditional medicine she was accustomed to receiving - The Gerson Therapy. http://gerson.org/GersonTherapy/gersontherapy.htmReplyDelete
Do some research. Its efficacy is proven and its for all long term maladies, not just cancer. I have no connection to Gerson so am promoting it in light of the tremendous results it has gotten with so many. Anyway, my prayers are with you. Namaste
Smart post, love it - made me smile and think. This is a good thing (and sometimes rare, ha ha ha).ReplyDelete
Sending warm thoughts your way for all you are pushing through.
And uh... who the hell is Tony Abbott?
Thank you for your super sense of humor. It is uplifting. My 22 year old daughter has (BOB) really bad, so I like to read your posts and later tell her about them.ReplyDelete
Hugs to you,
You know, dude, every time I see Heidi Klum on TV, I think to myself, "Wow, is that M. living the party life again?" and I'm totally jealous. It's gotten so bad I can no longer tell you apart. You and Heidi are like the Olsen twins except you guys are actually identical.ReplyDelete
I am reading this post in public and laughing out loud. I am sure the folks in the coffee shop think I'm deranged to be laughing this loudly while sitting alone staring at my laptop but everything you said here I can so relate too. I wear oversized sunglasses in the store so people will think I'm just too cool and surely recovering from a wild party fromn the night before, haha. They would probably never guess that I am a 26 year old in the body of an 85 year old. While upright, especially in stores, I find myself bargaining with god to please not let me pass out or somehow embarrass myself. Ah the persistence it takes just to leave the house these days.ReplyDelete
Dear Rusty....my (evil) twin on the other side of the planet....oh how nice it is to be able to read and relate! We are far and few between...so just hearing about the trials of others can be...well...how shall I say this....????....misery loves company I suppose! Once again you have made me smile. I am currently in a down phase.....pulse pressure is low and don't feel well enough to go to the hospital for fluids....but appreciate that I have a provider that works with me. (A long journey to find one!!!) Keep on fighting the good fight!!!!ReplyDelete
Thank you so much for your blog. I want you to know that you have inspired me to finally bite the bullet and get a wheelchair so I can actually leave my house and enjoy things out in the world with my family instead of staying home because I'm too afraid I'm going to collapse or pass out. Thank you so much.ReplyDelete
You are one smart,brave and talented girl!ReplyDelete